Posts By Daniel Lewi

Another mountain, another thought for Amelie

My good friend Danny How (who is doing the 13 marathons in 13 months challenge with me for The CATS Foundation) send me an email the other day titled “Another mountain, another thought for Amelie”. I opened it wondering what it could be about as his normal emails rarely have a title and are usually full of training stats.

What I saw was amazing – there were pictures of a someone at the top of two mountains with a sign saying Amelie.

Amelie is there in spirit

Amelie is there in spirit

After speaking to Danny it turns out that a friend of his, Jose, has a friend called Luis who was really moved by Amelie’s story and how she is coping with Tay-Sachs. As a keen climber he now carries a sign with Amelie’s name up each mountain and takes a picture of it at the peak! As you can see in the pictures they aren’t exactly small mountains either.

At the top

At the top

Patricia and I are really touched that someone who we don’t know is thinking about our daughter and doing something quite extreme in her name. Amelie may never be able to climb a mountain, but in spirit she is there with Luis every time he gets to the peak. Thank you for doing this and thinking of her!

Happy New Year from Amelie!

We have somewhat neglected this blog for the past few months as we have been busy with setting up The Cure & Action for Tay-Sachs (CATS) Foundation. So, one of our New Years Resolutions for 2012 is to get back to updating this blog regularly!

So, we will start with Christmas – this year we spent it in Porto, which was great fun and a big change from last year where we were in the UK with my parents.

Amelie and her cousins on Christmas Eve

Amelie and her cousins on Christmas Eve

We were in Portugal for just over a week, which gave the three of us a chance to catch up with Patricia’s family and also her friends. Amélie was, as you can imagine, spoilt rotten by everyone which she really enjoyed!

The main highlight for me was seeing how happy she was with all the cuddles and kisses she got! Amélie seems to take after her mum and doesn’t mind being kissed and cuddled by everyone she met – being British I still find the whole kissing everyone you meet, including strangers, a little bit weird! The only downside to all the affection she was shown is that she enjoyed all the cuddles so much it has made putting her down for her afternoon nap a bit more difficult. Now we are home as she expects me to rock her to sleep in my arms!

It was also great to see her enjoy her food over Christmas. Feeding is always a concern due to her posture (we have the special chair at home) but she ate better than ever. She devoured everything put in front of her, which put a smile on her Grandparents as they kept saying she must prefer Portuguese food! It was also a great break for Patricia as she was able to catch up with her friends and family who she doesn’t get to see that often anymore. A few of them have already said they will try to come over to see the three of us later this year which will be nice. It sounds like we will be having a busy 2012!

Looking back – #My7Links

Travel website is currently running a web series where people are asked to dig out old posts, in answer to seven fixed questions. Steve who is one of the patrons for The CATS Foundation was kind enough to nominate us through his own blog You’re Not from Around Here, Are You. Take a read of it as it’s a very funny and honest view of travelling and living abroad!

So, we have done a mix of posts from Today Was Not About Tay-Sachs and The CATS Foundation charity site:

Your most beautiful post

Amélie all ready to go!

The beauty of this post is from the message within it. Our trip to Eurodisney showed that in light of the news we had given about Amelie we were still able to have fun as a family. To us that is the most important thing – that we don’t moped around all day but rather enjoy everyday we have as a family. Also, the beauty is in Amelie – she looks stunning in every photo!





Your most popular post

How Tay-Sachs is inherited

Our post “What is Tay-Sachs?” on The CATS Foundation is one of our most popular posts as it really provides an overview of the disease that many people can understand. There is a mix of medical terms and language which non-scientific people can understand which is why a lot of people have been accessing it. When we posted it, our aim was to make things as simple as possible so that when people are confronted with the disease they can fully understand it.



Your most controversial post

How people can help

There were mixed reviews about this post “12 ways to help someone you care about what a child with a serious illness” – some saw it as letting people know how you feel while others thought it showed anger. I guess that is why it was controversial as everyone understood the message in a different way. It was important for people who are not in our position to not understand what we are going through, but rather for people to see how they can help. Off the back of this post we found that our friends and family rallied round us and really helped us move forward with things.


Your most helpful post

Stay strong as a family

The “Just Diagnosed” post on The CATS Foundation is our most helpful post as it is aimed at those families in the same position as us. We wanted people to know that they are not along and that there are other people they can contact who can share their stories and support one another. This post has had numerous hits and many other families have been in contact with us – this shows that the message it contains is working!




A post whose success surprised you

Izzy and James

When we opened up Today Was Not About Tay-Sachs to other families to contribute to the blog we didn’t realise how successful it would be! This post outling the story of Isabella showed not only that there are other families in our position, but through the comments they also had an amazing network of friends and families who are there for them.





A post you feel didn’t get the attention it deserved

Training for a treat

Training for a treat

This post deserves more attention for the simple reason it shows how much Amélie has to go through in one typical morning of every day. While most children her age are out running around Amélie spends her time with her dad exercising to make her body strong. We feel it shows her strength of character – she never complains and always completes the the exercises she has to do. Amélie is a very special girl and everyone should read this post to see how well she is coping.



The post that you are most proud of

Patricia and Amelie

Finding out that your child has a terminal illness knocks your world from its axis – it is one of the hardest things to be told by a doctor and to come to terms with. I can not put in words how proud of Patricia I was when she posted “Our Story” as it was a big step in accepting what our future was going to become. T open herself up to the world and let people in on what we went through as a family is one of the bravest things she has ever done – this is why I am so proud of this post as well as being proud of Patricia. She is a very special person and also an amazing mum to Amélie!


Here are the blogs we’ve nominated in order to keep the #My7Links project going – we hope you enjoy reading them and staying in touch!

  • Our Little Seal – A touching blog about Ronan who has Tay-Sachs and how his family are coping with the disease.
  • Road King UK – a fun blog about one mans experiences on his motorbike!
  • Dan Martin Extreme Athlete – this man does not stopping pushing his body to the limit – his next challenge is an around the world Triathlon (including swimming the Atlantic)!
    Here are the #My7Links rules to follow and we look forward to reading the posts!

    Training for a treat!

    Bench sitting

    Bench sitting

    The last few posts I have written have shown all the treats Amélie has been getting and they all seem to be linked to food! So, as a balance I thought I would let you in on how our mornings together usually go and how she actually earns her little luxuries!

    Pre workout

    Amélie normally gets up nice and early (just be 6am!) and has her breakfast at 7am followed by a nap at around 8:30am. She is sleeping a bit more these days but I think this is because she goes to bed later now and is doing so much more.

    The next stage of her morning involves her exercises – just to show everyone that I’m not just feeding her sugar!

    Exercise 1

    As in the photo you can see I put a special belt around Amélie to build up her core muscles. The easiest way to describe this is it’s like a weight lifting belt – it forces her to sit up straighter and work her stomach muscles. I leave this on her for about 10 minutes while playing so she gets used to it then I move onto the next part of her workout…

    Exercise 2

    The next stage is for Amélie to do a sort of sit ups by pulling herself up holding my fingers. We do a few of these then I change to work on her obliques (side muscles of her stomach) – these are exercises we first did in the pool during hydrotherapy. The plan is to make her stronger so she can sit better while feeding, playing and in the pram. The newest exercises are the last two and most challenging ones…

    Exercise 3

    This tough exercises requires Amélie sitting on a special bench given to us by the physios – she is on it in the picture. When she sits on it the exercise is called bench sitting and is difficult for Amélie as she has to really work her core muscles hard to stay up right and still.

    I let her sit on the bench on her own (making sure she doesn’t fall) and then start relaxing her legs so her feet can go flat on the floor. As Amélie has tight muscles her natural stance is to stretch her legs out straight in front of her but with a bit of work they are getting a bit loser meaning she can put her feet down. I do this for a few minutes then change to the last exercise…

    Exercise 4

    This one involves me holding her pelvis in a neutral position. According to the physio, Amélie (the clever girl she is) has adapted her position by sitting at a slant to the right with her hips then to the left with her ribs and shoulder – she has done this so she can sit up. This isn’t that good for her though as it puts pressure through parts of her body which normally wouldn’t have any. Over time, we are hoping to make her be able to sit up straight.

    Post workout

    After all these exercises, which normally take between 20 – 30 minutes we then have a cuddle, play and sing (usually “row row your boat”, “wiggly worm” and then “zoom zoom zoom we’re going to the moon”) which she loves. Then it’s time for a late morning nap as the exercises tiring – after that its time to head out for the days activities.

    So, as you can see Amélie always earns her treats!

    A weekly treat from Granddad!

    Granddad and Amélie

    Granddad and Amélie

    It has now become a bit of regular thing that Amélie‘s Granddad comes over once a week and takes us out for lunch. There are loads of nice restaurants in Blackheath so she gets to try different food all the time. Gran has been busy the last few times so has been coming over on her own meaning that Amélie is getting treated twice a week!

    As much as Amélie enjoys lunch she is always waiting for the main treat….a slice of apple cake from a local bakery called Boulangerie Jade!

    When Amélie was diagnosed my parents took the three of us out to discuss everything, from the uncertain future which lay ahead of us to whether we should move house. I remember that it was a nice April day so we got a table outside at the bakery to have coffee. We bought a selection of cakes and soon realised that Amélie had a clear favorite, the apple!

    So, ever since that day, whenever my parent’s visit we always go to this bakery for cake, and as you can see in the photo she is clearly enjoying it!

    Pancake Day (is most Saturday’s)!

    Amélie enjoying Nutella pancakes

    Amélie enjoying Nutella pancakes

    As a little treat for Amélie and her mum I sometimes make them something special on a Saturday if they’ve both had a busy week!

    So, having bought a new jar of Nutella especially for the occasion I thought they both deserved something tasty to wake up to (well, for Patricia to wake up to as Amélie had already been up for a couple hours!).

    Both my girls have a bit of an addiction to Nutella – together they can easily get through a small jar in a day! With my pancake batter made I started cooking for two very excited people and they quickly devoured all the pancakes put in front of them!

    They both enjoyed their start to the today although Amélie was so covered in Nutella (it was in her hair as well) we had to give her bath once she’d finished!

    I think I will now make this a regular thing as it made for a perfect start to the day!

    Swimming then lunch – it’s a good life!

    Amélie & Charlie

    Amélie & Charlie

    Last week I took Amélie for a session of hydrotherapy which went really well and was made better as there were only two of us there. Hydrotherapy is basically physiotherapy in water and as there were only a couple of us it meant we were able to spend longer with the physio and go through all Amélie’s exercises. We are working on building up her core strength at the moment so she can sit better and stay as mobile as possible. The exercises range from making Amélie kick in the water to trying to convince her to do sit-ups! I keep telling her that it means she will have a wash board stomach but she’s never impressed…

    After the last session we jumped onto the train and headed off to meet my good friend Emma and her little boy Charlie in West Wickham. We had a lovely day out and it was nice to see Amélie interacting with another baby – it’s an annoying thing that we are still waiting on a nursery place for her. Amélie first met Charlie when he was a week old and they have always got on. However, Charlie does like to play hard to get and Amélie works very hard to get a bit of baby speak going between them!

    When Mummy’s away…

    Amélie enjoying a snack

    Amélie’s mum has been asked to help out a friend with some work doing a blog for a kids wear company (check it out Their Little World). So, Amélie has been entrusted in their care of her dad!

    Well, as you can imagine Dad’s are known for spoiling their kids and I’m no different! However, I did get some disapproving looks after giving Amélie a little mid morning snack in the coffee shop recently – I’m not sure why though….do you?!